As ThinkGenetic outreach coordinators so much of what we do includes hearing the stories of those with genetic conditions and meeting incredible advocates. One such person our team recently met was Monica Weldon, President/CEO of Bridge the Gap – SYNGAP Education and Research Foundation.
While preparing for the Emory Genetics Laboratory sponsored webinar “Innovative Patient Education and Support Options: From Diagnosis to Next Steps” at which ThinkGenetic co-founder Dawn Jacob Laney was co-speaking [see recording here], we learned of Monica’s incredible persistence and dedication to learning and uncovering options for her twin boy, Beckett. Beckett was the first to be diagnosed at Texas Children’s Genetics Clinic with the gene mutation SYNGAP1 (6p21.3) in 2012. Her tireless effort resulted in the establishment of Bridge the Gap-SYNGAP Education and Research Foundation.
When I spoke with Dawn about her experience with Monica she stated, “I am very impressed with the growth of Bridge the Gap-SYNGAP and Monica! Going from an undefined genetic condition to a strong advocacy group is no easy feat!”
Speaking of growth, The First SYNGAP1 International Conference is taking place November 30 and December 1 and is sold out!
“The biggest thing is that support group partners like Bridge the Gap-SYNGAP ERF are really attuned with the needs of its members,” Dawn explained. “This is a great model to help advance to the next phases of development and treatments and support families as well. This conference is clearly a place for families to ask questions and get answers and to help educate peers, providers and researchers. Since ThinkGenetic is all about getting out accurate information and next steps this event is our bread and butter!”
While the tickets are sold out we are happy to be joining in the mission of “bringing together patient families, clinicians and researchers as equal stakeholders in order to accelerate research discovery and close the gap to clinical impact” through volunteering at the event. If you couldn’t get a ticket you can still join the conversation taking place at the event by using #syngap1conference .